Wednesday
Went out last night for a couple of drinks with a few friends and had a very good time. I definitely need to do that every week as it is really hard to fall deep into the horrible feelings that come with having a terminally ill child.
I was trying to explain to someone yesterday or the day before that I don’t treat Rachel like she is dying. I still give her a hard time, still throw her on the couch and tickle her until she begs for mercy and I still like to pretend that I forgot her name is Rachel (while I call her Julie). She is a good kid and is upstairs at this very minute babying Holly and playing with Boston in her room.
That boy, Boston, is a heart attack. My heart nearly stopped when I found out I was pregnant with him, and every time he jumps off the couch and especially the time when he took a header into the coffee table. He is wonderful and obnoxious and sure can eat. And more than being best friends with London, he is a therapist to Rachel. He doesn’t run off to be mean because she can’t see, he doesn’t call her stupid or say things like “you don’t even know what a battery is?”. All he wants to do is play with her, be loved by her and team up with her (mainly against me).
Boston Fenway – I am so glad that you are here on this earth. 
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Boston is amazing. It is cool to see him struggle to do the right thing and not play with the swiffer sprayer or his other naught things.
Aww, Boston! So cute. Could you imagine Boston, London and Jackson all in the same room? There’s a reason all their names end with ‘ON’ – likely because there’s no ‘OFF’ switch
I know I need to have ‘me time’ with the girls, and I don’t have a tenth of what you’re dealing with on a regular basis. So enjoy those times, my friend. They’re priceless
Had a LOT of fun!!!!
Boston Does Rock btw
Kate its not just Boston that can eat….Rachel is a great eater. Julie & London too. Rachel had 4 scrambled eggs with ham that she cooked for her self at 8 am followed by shopping at Christmas tree shop. Then grilled cheese at Panera bread with chips at 11 am.
Definitely a great appetite. Hugs Mum XXXX